slider-iamgsd-coast-walk.jpg

IMPROVING LIVES

McArdle walkers in Wales, August 2022.

Welcome to IamGSD!

   

Our information is prepared in English.

  

On the “Languages” button you can learn about using the Google Chrome browser to enable you to read our automatically translated site in your choice of 100 languages.

  

Many of our printed publications are available in several languages in addition to English.

MUSCLE GLYCOGEN STORAGE DISEASE

future-leaders-video.png

October 2022

FUTURE LEADERS TRAINING COURSE

IamGSD is offering a new course in 2023 to train future leaders for the walking courses for people with McArdle’s and other muscle GSDs. It is hoped that this will lead to more courses being available in more countries around the world. A short presentation about the course is now available on our YouTube channel. For those that complete the course there will be a certificate, a manual, resources and support from IamGSD.

three-leaflets.jpg

May 2022

THREE NEW LEAFLETS LAUNCHED

We have launched three new leaflets in our series:
At hospital (support for McArdle people and emergency doctors when needing to attend hospital due to an episode of rhabdomyolysis).
At the gym (part of our Training Support package for physical therapists and personal trainers).
At the moment (for McArdle people and their partners). 

IGSD2022-logo.png

September 2022

INTERNATIONAL CONFERENCE ON GSD

There is a series of international conferences on glycogen storage disease held approximately every three years. IGSD2022 will be hosted by the AGSD US, starting on 20 October 2022. Due to the Covid pandemic this will be an entirely online event. The presentations will remain available until April 2023. See the conference website for more details and registration.

walking_edited.jpg

May 2022

GLOBAL WALKING CHALLENGE

MAY 21st to 27th

An incentive to get moving, with our 9th Global Walking Challenge. Join us in this challenge to walk the length of long distance trails around the world! You join in virtually, walking wherever you are, and sending in your mileage each day. Send us comments and photos as well! We will add the miles all together and tick off some amazing trails. The big challenge is to culminate with finishing the California Coastal Trail at 1931 km (1199 miles).
 

cpg-distribution.JPG

June 2022

CLINICAL PRACTICE GUIDELINES ISSUED

IamGSD is distributing its booklet on the Clinical Practice Guidelines for GSD 5 & 7, which were recently published in Neuromuscular Disorders. We also include a set of our 6 leaflets and the latest Medical Overview booklet. We have so far issued the pack to over 80 clinicians, researchers and other interested parties, including everyone listed in our Directory of Clinicians.
If you know of another clinician with an interest in McArdle’s or Tarui’s, please let us know.

reneo-logo-200x200.png

April 2022

UPDATE ON REN001 PHASE 1B TRIAL

A Reneo Pharmaceuticals, Inc. update included details on their trial in patients with McArdle disease. This showed an adequate safety profile with no serious adverse events. After 12 weeks of treatment, participants showed an average increase of 38.5% in fat oxidation compared to baseline. However, the increase in fat oxidation did not result in major changes in the distance walked during the 12-minute walk test and no corresponding changes in heart rate, fatigue or pain were noted. Reneo does not plan to pursue a Phase 2 study. They will continue to partner with us to further our advocacy and education mission.

NEWS

NEWS

PUBLICATIONS

 

at-leaflets-composite.jpg

IAMGSD has publications in English (a few other languages) to support people with McArdle disease, their families, schools, employers and doctors. 

COURSES

 

Learning management techniques on a walking course.

IAMGSD promotes walking courses to help people improve their condition. These have so far been held in the USA, UK and Germany, with more countries to be included in future. 

CAMPAIGNS
Our campaigns of activity and awareness raising.

IAMGSD campaigns for early diagnosis of McArdle’s and other mGSDs, the adoption of international standards of care and the provision of centres of expertise.

 

RESEARCH
Our research agenda for muscle GSD.

IAMGSD works to identify the needs of people affected by McArdle disease and other muscle GSDs, and to stimulate, encourage and support research efforts to meet these needs.